Monday, 30 December 2013

How?

how does a family cope after the loss of their child? how do they Move on? How do they get up every morning? Make a cup a tea? Get dressed? Live? How?

Another funeral today of a truly precious child and beautiful parents. And a reminder that another family now has to live without their child.
I don't know how they will do that. How anyone does? I just know they shouldn't have too. It is so wrong.

I'm so very sad for these parents I'm so sad for all the parents and their families that I know who now live without their child. I'm so sad that it's also a huge reminder of how fragile Jayden's life is. Not that I need reminding. Not a second goes by that I'm not very aware of that.

I wish I could make it different. for all of us. I wish I could change it. I wish I had the power to do that. because the pain and suffering that the children endure is devastating and the parents heartache, excruciating.

When I look at my son I love him beyond words. With every inch of my being, he is my world, as are my two other children. To even think I may lose him one day is truly unthinkable and these parents are now living that unthinkable.

I so wish someone could find a cure for these cancers. Now.


Last few days

Saturday

Danny's mum and dad visited today which was lovely and the kids were over the moon. Always love to see them. While they were here I was able to duck out and visit a wonderful lady I have met through this journey. We had been in contact via email for some time but today was the first time I had met her in person as she had traveled from overseas to visit family in Perth.
Really lovely person. She was everything I expected her to be and more. It was so very nice to finally put a face to her name.

I arrived back home not long after and my kids were not the slightest concerned that I had gone. When Nanna is around they are always happy.
 
After they left we decided to go to the river and have a BBQ for dinner.
It was a beautiful evening and we all had a really lovely time.
 Above: Luke and Jayden playing.
Above: all three looking so happy. love my kids.

Sunday

I woke this morning to the sound of my boys giggling. Love that sound. Jayden had jumped into Luke's bed with him and they were laughing about whatever they were whispering about to each other. I laid there listening to them and feeling so grateful to have them in my life. And so happy that they have each other. But with those feelings came the sadness that the bond they have that's so strong could one day be broken. It's so hard to fully enjoy those moments with the fear of the future constantly lurking in my mind.

They are so happy together and they got out of bed together laughing and giggling...not a care in the world...just each other.
Below: pictures of my boys from the last few weeks...











It's so much later now. In fact in the middle of the night. I have woken from a dreadful nightmare and am now sitting in the kitchen. So relieved to have woken. It was one of those nightmares that leave you so shaken that it takes some time to fully feel normal again. Even now after being awake for sometime I'm a little nervous about going back to sleep.

But at least I got to wake up from it.
If only I could wake from the one I now live......

Sunday cont..,.

After the boys woke up, I got up. Later Luke and Danny spent the morning bike riding and Jayden Layla and I hung out and then went and visited my sister. Jayden loves her.

Jayden and I went riding on our easy rollers in the evening as Layla went for a play at her friends house and Danny and Luke road their bikes again.
It was so lovely to get out of the house and just have fun outdoors with my little man. I enjoyed racing after him and pretending to crash and rolling on the grass, which I was left so itchy afterwards from. As I had those moments with him every few minutes I would find myself just gazing at him. Soaking him up. Moments where I felt like bursting into tears because the love I have for him is so strong and the very thought of losing him hurts so bad. So bad.

Monday

Monday morning and I woke to Jayden snuggling up to me and kissing my face "love you mum" he says, then "can we get up now?". How do children wake so quickly? How do they go from a deep sleep to instant alertness? I certainly cannot do that. However I am happy to always give it my best shot for my little man. Luke was already up and playing so we all sat around the table and had breaky. Later we went out to the shops, just Luke, Jayden and I to spend some of the Christmas money they received from relatives. A scooter for Luke that we found on special made him very happy and a Digger for Jayden. Back home and both were happy to play with their purchases.

Layla arrived not long after from her friends house and we all had lunch.
Took Layla out on her own after lunch and we spent her Christmas money on clothes.

Back home and dinner, bath and play and now bed. I'm laying between both my boys whom are snoring peacefully.

Had a lovely time with my kids today. It was so nice to just hang out with them. Love to do that.





Friday, 27 December 2013

It's early in the morning. Two days after Christmas.
I was unable to write in here on Christmas Day, firstly Because I was so tired from waking at 4:15am and secondly because I wanted to use every last drop of energy on my kids and family.

Luke was the first to wake as always but I had to tell him to try go back to sleep before he woke anyone else. Of course he found that almost impossible and I laid awake with him. Layla was next to rise at 5:30 and Jayden was the last one, still snoozing.

I couldn't make them wait any longer and so we whispered in to Jayden's ear "santa has been, do you want to come open your presents". In a second, his eyes were open, he sat up and groggily climbing out of bed. So funny. How are kids so in tune, in their sleep??

They all ran into the lounge room to see all the presents under the tree. All of them, so excited.

It was so lovely to see them so happy but inside I was struggling to really enjoy the moment like I would have liked to. I know I have to accept that this is as good as it gets (in my head) and I will always worry about the future. But I also sat there watching my kids and thinking about the parents I know that no longer have their child with them. I know so many now and my heart aches for each and every one of them.

I sat on the carpet with my kids, watching them open each present and worried how many more Christmases will, I get with Jayden. I hope with all my might that we get to spend so many more Christmases together and I try not to think about it ever being any different But it's so hard not to let it cross my mind.

I hoped that Jayden's Christmas was perfect in his eyes as I tried so hard to make it so, for all of them.

I know he would have been happy with anything but I just wanted it to be perfect. He's such an easy going little man and smiled at everything he opened. Grateful for it all and not complaining once.

We later joined my sister and her family and my dad and his partner for lunch at a restaurant nearby. There we enjoyed a yummy meal and Santa came to visit the kids. Santa gave all the children there a gift. Luke received a car and Jayden a plastic donkey. Jayden looked at Luke's car and back at his donkey and grabbed that donkey and galloped it along the wall back to our table where we were all sitting. He played with it until we left and never once mentioned Luke's car or that he would have preferred that. He is like that with all his presents. Even the tractor trailer I bought which so sadly he can't reach the peddles to ride on and it can't be adjusted but he was happy with it all the same. He didn't care, and Luke rode it for him with him in the trailer and he was so happy with that.

Love my little man.

After lunch everyone came back to our house to give each other their gifts. Beautiful day.

...................

It's much later now , the boys are asleep. Busy day and I'm so tired. Seems to be the norm at the moment. We have spent the last couple of days down at the river which has been lovely and by the evening we are all exhausted. The boys had No problem falling asleep and so did I but Layla came in to get me back up.

Ive got so many things I want to put down about the last few days but I need to sleep.

Instead here's some pics from the last couple of days.,....


Jayden and Luke, the day before Christmas


Jayden, Christmas Eve.


Mum and Jayden at Christmas lunch


Jayden with his big glass of water!



Us with Santa at Christmas lunch


Boxing Day with the kids


Out on Boxing Day


Boxing Day at the river and park



Jayden learning to ride his boogie board.


.........

Monday, 23 December 2013

One more sleep

It's early. I'm awake before everyone else, for a change. Jayden is snuggled up next to me, snoring quietly. Luke is on the other side sleeping well too.

It's 5:30 and I should be sleeping in too. Don't often get the opportunity to sleep past that time. But I wanted to quickly jot in here a few lines while I have the chance.

It's Christmas tomorrow and I'm so grateful. I'm so grateful my little man is with us and we are going to be celebrating as a family.

I worry and fear about the future and it hurts beyond belief but I try not to think of a Xmas without my son and instead focus on this Christmas that I will have with him and hope and pray I will have many, many more yet with him, with all my kids. But I would be lying if I said the fear was not in the back of my mind always, as I wrap the presents and do all the things that go with celebrating the day. I'd be lying if I said I didn't fear that this Xmas could be our last with him. I'd be lying if I said I'm not going out of my way in case it is. I would be being honest if I said that I'm petrified that it may be our last and I'm trying with all my might not to think about the next one or the one after because when I do the fear and sadness kicks in and I find myself in a world of pain.

I lay here with him now and I'm so grateful he is here. That I will see his smile as he opens his presents tomorrow and hear his laughter. There is not an inch of me that doesn't hope with all my might that I will see him grow old and celebrate so many more Christmases with him. The pain of knowing I may not is truly unbearable. I love him so much. Every little piece of him. Everything about him. As I cry now at the very thought, I try so hard to breathe and just live in the now. Remind myself he is here and that is truly wonderful. But damn, it's hard not to be scared.






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Saturday, 21 December 2013

It's super early and Sunday morning. Was so tired when I woke this morning but no matter how tired I am I will never stop being grateful Jayden is with us, waking me in the morning and we are not in hospital. So many still are.

I'm probably a little too tired to write in here but a couple of days have passed and I don't want to miss putting those memories down.

Friday I spent running around in the morning for a couple of hours doing some last minute shopping and Friday was also the start of the kids school holidays. Yah! So happy to have them home.

Jayden is especially happy to have them home and spent all Friday playing with his big sister. She is amazing. She sits with Jayden for hours, playing art activities that she sets up or role playing shopping or kitchen play. Anything. And he just loves her company.

When I came home on Friday after being out I came in to see Layla and Jayden dancing to Christmas carols in the lounge room. Beautiful sight. Massive smiles on both their faces, super happy kids. Such a beautiful feeling to see my kids so happy together.
That afternoon Luke had a sleepover at his friends house and couldn't get there quick enough. Asking me every five minutes if it was time to leave. I so didn't want him to go as it was his first sleepover at a friends and I was already missing him. And of course, worrying. Of course it was all fine and he had a wonderful time. Late night, but crashed early last night to make up for it and is still asleep now as I write in here.

While he was at his sleepover I thought it was a perfect time to do some Christmas wrapping so Layla helped out by putting Jayden to bed. He just adores her and she him. He wasn't being very cooperative at first but Layla has this way of getting around him and can just about get him to do anything. Honestly, she's a miracle worker.
She read him his books in bed then laid down next to him until he fell asleep. All the stuff I normally do but he is so happy to have her do it too. Once he fell asleep she came and joined me and told me all about her effort of putting him to bed. She was so over the moon that he fell asleep with his arm around her and legs intwined with hers. She told me she stayed watching him sleep for ages. And said she felt like she didn't want to leave. Beautiful. I so understand that feeling.

Today we have a day planned with Danny's family and I'm so looking forward to seeing them all.
The kids are too.
Love to see my children happy. That's all I want. All I want ever.




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Thursday, 19 December 2013

Missing out

I have Been meaning to write this blog entry since Mandurah but so many other things have come up I haven't until now.
I wanted to express my thoughts on the topic "missing out".

Every parent doesn't like their child to "miss out". Whether it be a special occasion, a certificate, a group exercise, anything that their peers receive, we don't like to see our kids miss out. We know it hurts them and we in turn, hurt for them.
But when your a mum of a child that's had cancer and that child missed out on something that you know they are entitled to have and for what ever reason they were overlooked then, that is huge! Monumental huge!

It sends you into a tail spin that works its way through you so fast that theirs no way of stopping it. It brings to the surface every moment, every second that your child spent in hospital, sick, and "missing out". It brings to the surface every procedure your child had to endure while other kids their age were playing in the playground. All the emotion that goes with that, all the memories that you never, ever, forget and all the sadness and knowledge that your child may miss out on the very thing you bought this child into this world for- LIFE! So when your child misses out on something that others may think of as nothing, well, it most certainly is NOT nothing.

Sure, your child gets over it but you don't. You don't because you've watched your child endure so much already. You've watched them miss out on so much already and to see then miss out on anything, no matter how minuscule it may be to others, it's huge. It is definitely not minuscule to a parent of a child with cancer. Nothing is minuscule anymore. Today is no longer minuscule. It's huge! There's no "oh well, there's always next year". No longer can you say that. What if there isn't a next year? Is what you think. And if there's not then your child has missed out monumentally on an experience that they deserve and you know they have already missed out on so much. They have missed out on so much life, play, and being a normal kid. And the words "ITS NOT FAIR" ring through your head like a loud orchestra.

This happened to Jayden when we went to Mandurah for our Christmas stay. What happened was the planned visit from Santa Claus happened after Jayden was put to bed when previous years it had always occurred around 5ish. Yes, I admit there was a lack of communication as I wasn't aware he was coming late and Santa wasn't aware Jayden was going to bed. However I did ask if he could come in the morning so Jayden wouldn't miss out but was sadly declined. So yes, it sent me into an emotional tail spin that had me yelling at my dad through tears "that no one understands how bloody hard this fricken journey is" and an hour spent balling my eyes out next to Jayden as he slept.

Days have past and I'm able to look back on it and remind myself of the world I now live in is very different from the normal world in which it exists. I had briefly forgotten that then. I had the assumption then that everyone else there would 'know' how monumentally important it was for Jayden not to miss out on seeing Santa. that he was so excited about seeing him and how gutted I would be if he didn't. That every time he mentioned him afterwards, the next morning when he saw the Xmas sacks and not one for him, when we left and he asked about him, made me want to burst into tears all over again and scream my head off at the faces that thought it was no big deal. But that would be unfair, as all of those people concerned couldn't possibly understand the devastation to me of my child missing out. They couldn't possibly get that, and it's unfair of me to expect them too. But that doesn't mean I'm not incredibly frustrated.

Fortunately we have a wonderful friend who listened to me have a king whinge about this event when we came home and took it upon herself to get Santa to our house. God, how I love this lady. So Jayden got to have that experience in the end. The big point I'm making here though is this, when our children miss out its big! Really big! Bigger than big. So if you ever hear a mother going absolutely nuts about her son or daughter missing out on something you think is minuscule and she's a cancer mum then, you will hopefully, understand why.



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It's not late, for a change or really early in the morning. It's evening. I've just put my little man to bed. Read him a few of his favourite books. Turned the light off then we chatted for a little while. Watched him play and talk with his teddies until finally his eyes closed and he's snoozing.

I'm still laying next to him and I'm so grateful for this moment. For each and every moment I get with him. With all my kids.
We had another day at home playing Lego and hanging out. He's never really one to want to go anywhere. He's just so happy to be home and hang out with mum, or dad. He comes to the shops with me or anywhere else I go but he's just as happy to be home. Me too.

I quickly popped out to the shops this morning by myself though, for some last minute shopping and then back home. I bought Jayden a tractor trailer "ride on" today for Xmas. I ummmed and ahhhed about it for ages as it was very expensive. However I knew he really wanted it and believed Santa was going to give it to him. I almost had to pass on it because of the price but in the end I just couldn't say no and decided i would take some others things back to the shops to make up for it. I just couldn't pass on this.

My thoughts when making this decision was "what if this is his last Xmas... And I didn't get it. I know I would hate myself for that". I also know I shouldn't think that way but it's almost impossible not to. So much of my Christmas shopping has been done with those thoughts in mind. I just hope that I can make it the best Xmas ever. One that none of us will forget.

I have to say as I lay here now I'm glad I did. I feel really good that he's going to wake up Christmas morning and see it there. (Only hope I got the right one). I have spent more than usual and know i should be saving more instead. but I also know the smiles on my kids faces on Christmas morning will out way any loss of savings. Really excited about seeing those grins. Will be a beautiful feeling.

He's now snoring peacefully. Love that sound. Love all the sounds he makes. Except the ones made from vomiting. The other night as we sat eating dinner he had a coughing episode which is always how his vomits start. It immediately got my attention and I felt my heart sink. In that second, I watched him, he looked at me holding his mouth. I looked at him worried out of my mind. Him wondering why I'm worried. Me, holding my breath, praying. Fortunately, and thank heavens, He didn't vomit. I relaxed a little but didnt take my eyes of him and sat, quietly stressing.

It never goes away. The dark cloud that looms. The worry of the future. I get moments when I'm able to breathe and as time goes on they get a little longer but the second something like that happens it all comes rushing back in. The fear. The fear of the future.

I hope and pray with all my heart that I will see my son grow old, all my kids. See him grow Into a man. A dad. Hold his babies. I know for now, all I have is today. I know this is what I have to focus on. But I will always hope for a lifetime.




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Tuesday, 17 December 2013

Haircuts

Luke and Jayden got their haircut today. Luke went first and finally got his long locks cut off. He was getting attached to them until recently. I think it's because the weather has heated up.




Jayden was super reluctant to get his done as he desperately wants it to be like Layla's. But after seeing his brother brave it he decided he'd give it a go too. But on one condition, and that is that Luke stand next to him while he gets it done. So cute. He really loves his big brother and Luke really loves being a big brother. He was definitely born to be a big brother as he really looks out for Jayden when he knows Jayden is feeling vulnerable, worried or scared. He just knows when Jayden feels like this and is by his side. Love the love of siblings.





It's really late and I'm tired but just as I tried to put my head down I realised I wanted to put this moment in here.

Jayden's hair was only trimmed as he doesn't want it short but today was the first day for his first " real" haircut as the one before was just to neaten things up. With This one all his hair has now grown over the back of his bald patch at the back of his head from the radiation and it is now evenly cut because it was long enough to do so. So proud.
Love my boys.

Sunday, 15 December 2013

Lego, beautiful people and today


It's monday morning. 5:00am and I'm playing Lego on the floor with my little man. Well, he's playing Lego and I'm writing in here, stopping every 5 minutes to see his wonderful creations.






He's so clever at Lego. Not that I'm biased or anything.
He will tinker away with Lego all day. The sound of him chattering to himself as he does is truly precious. Love his little voice.

I'm so relieved I am feeling better today as yesterday I was not well at all. I hate wasting a day with my kids by spending most of it in bed.
But today is a new day and I'm up and well. Yah for that.
My kids were so beautiful yesterday while I was not very mobile and together with dad they made a cake!
First time I've ever known Danny to bake. And, it was really yummy!




I went out Saturday evening with two truly beautiful women. Both cancer mums. It was truly refreshing to be in the company of such gorgeous people. I often refer to people I've met and ones whom I hope will be life long friends as beautiful. What makes a beautiful person ? I think the answer to that may have been very different once to what it is for me today. I may have said someone who's honest, caring, empathetic, and loyal. I still think those qualities are truly beautiful but now I think it's more than that but i don't have the words to truly describe it. I can only say that they are also people who "get it". Some people need to live some tragic event in their life in order for them to " get it" and others are just born that way, accredit to their folks no doubt. I have met so many people like this, either through their own tragedies or just because they care.
I feel blessed to have these people in my life now although I wish it were under different circumstances.

It's much later. Lots of Lego played , getting organised for kids to go to school, dropped them off and now sitting outside with my little man as he plays in the sand out front. Sand that use to be grass but with two boys digging is now a sand pit. And long as they are happy.

I'm still a little tired but am so grateful for today. For feeling better and most of all, for being able to spend it with my little man.







Friday, 13 December 2013

Santa visit!

Santa came to visit us yesterday! Kids were so excited. Santa was amazing! Smiles all around. We are so very appreciative of our friend who has always been there for us and continues to be so through all the ups and downs of this journey. We love you "research nut" and your fabulous Santa!




Getting Santa's chair ready before he arrives!


Santa!


Kids all listening intently to Santa's every word!

Very special. Jayden's squeals of delight when he arrived was priceless! The smile on his face and the excitement in his eyes. Priceless. Love these moments.


Wednesday, 11 December 2013

Making memories

Had a fabulous afternoon with my kids today. Watering the garden always turns into fun when mum has the hose in her hand on a hot afternoon. Lots of laughs.
Followed by playing on the easy rollers. Love my kids so much.
Time spent with them is truly precious.
Jayden as always, loving it!




















Tuesday, 10 December 2013

It's late. About to go to bed. Had a lovely morning with my little man watching videos and playing Lego. Love it when I just stop. Take him in and just be with him and not worry about anything else.
I know how special these moments are and I try to make the very most of them. It meant I was way behind in dinner and stuff and a little stressed when it came to rushing around trying to catch up. But it was worth it.

When Jayden and I were watching a movie, he snuggled up next to me, reached up and kissed me on the cheek and said " love you mum". He is truly so loving. He makes me melt every time he smiles at me, gives me a cuddle and pretty much 24/7 actually. Love my little man.

I didn't take a single photo or video today which must be a first as I'm usually always snapping. Worrying I will miss a moment. Today I just tried to relax in that moment.

Of course I had moments of sadness, I always do. And the damn waves rush in when you least expect them. I push them back and keep on going. Sometimes it's really hard though.

I need to sleep.


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Sunday, 8 December 2013

I had a panic attack last night. It woke me from my sleep. The feeling of my chest so tight and the inability to breathe. I woke danny whom calmed me. I felt so scared, vulnerable. I knew what it was caused from. I knew it was because of stress. The weekend I had and the lead up to the evening that passed.

I was meant to talk at an event about my sons journey last night. I had spent all week writing what I wanted to say and that's why I haven't been writing in here. I was still editing it and changing it five minutes before we left. I just wanted it to be perfect, and I didn't want to miss anything out.

We arrived at the event on time and sat in the carpark watching people go in. It was an event held by the Telethon Adventurers. An organisation that I fully support and love the people behind it. I felt truly honoured to be asked to speak but as I sat in the carpark I began to feel increasingly nervous. Social events just aren't our thing, especially now. I find it incredibly difficult to participate in small talk and for me, it's just really tricky.

It was fancy dress.



Us before we left and Jayden dressed up in his pirate suit when he saw us in ours.


We mustered up the courage and went in. It was held on a sailing boat. Well, huge sailing boat that looks like a pirate ship. Beautiful ship. Great setting for a party.

We settled in on board and it wasn't long before I felt very unsettled about speaking. Everyone was in wonderful spirits, they had a comedian as the MC and it began to feel not "right". It was incredibly windy. Everyone was in party spirits. I couldn't do it. I spent so much time on this talk. It was the first time I could speak in public about my little man and that meant a great deal. It meant so much to me and danny. I couldn't possibly speak about something so important in our lives for a word of it to be blown in the wind. Or a word of it not heard. I know that Jayden isn't as important to everyone else as he is to me but I didn't feel that talking about him in that setting would have honoured him or our families situation. I realised as well that putting it in a blog and saying it in public is two entirely different things. It's easy to write things and not know if someone is or isn't reading it. But to say it where I can see the people listening is hard. It would have crushed me if I saw one person in the crowd looking away or pouring themselves a drink, or distracted in anyway. That would have hurt way beyond words. too much.

So I didn't do it. I spoke to emily and as always she was so understanding. Beautiful person, wonderful lady. I I felt really bad for backing out and I should have found out more about the event before I said ok. I know that was my fault. I was too focused on what to say to take the time to do that. My mistake.

So I tossed and turned about it all night last night to the point of exhaustion and eventually into a very scarey panic attack.

I have to say there was a build up from the weekend as well that compounded the situation too and I think by Sunday I felt like an emotional pin cushion.

I had taken the kids away on Friday to Mandurah for my dads Christmas family get together. The kids love this event as we get to stay at a lovely place with a pool and one of the uncles dresses as Santa and gives out a stocking full of lollies to each of the kids there. Jayden was particularly excited about that!

I didn't blog about it as last time we went away we had intruders in our backyard which fortunately our neighbours alerted too. This time danny never came but when we arrived back someone had ripped up our beautiful Xmas tree lights from our front garden. We were all crushed about that and it made us all feel like we should take them down. I do wonder about what people are thinking when they do such a thing.

Very sad.

We arrived in Mandurah on the Friday and the kids spent heaps of time in the pool. Jayden was a little nervous at first and held my hand the whole time he walked in the kiddies pool which he could easily stand in.
By the next day I was so proud of him as he did it without holding my hand and it wasn't long after that they he tried out a tube and loved it!



It truly put the biggest smile on my face as it wasn't that long ago that he was frightened of the water as we had put that fear in him from not allowing him near it because of his Broviac. but with the time spent away at Rottnest and now here he has truly began to love it. And it is an experience I so wanted him to enjoy again one day and that day was the day. Yah for my beautiful man! So proud.

Have to get kids ready for school now so will post this now and continue the rest of it later.........


Thursday, 5 December 2013

Wednesday

Lack of sleep makes for a truly difficult day. I feel so damn emotional right now I could scream. I know I have to have these days and I know they are normal but I wish I didn't. I wish my mundane life was back and being tired just meant being cranky for the day. Now it leaves me a vulnerable emotional basket case. Although I often feel crazy anyway.

Putting my thoughts down helps. Wish it meant they stayed on the computer screen and didn't remain within me though.

Jayden woke early this morning and woke me up like he always does with kisses on my face. This morning though I told him mummy was too tired and needed to sleep more. He replied" ohhhh" in a disappointed voice but cuddled up to me anyway and went back to sleep. Instead of doing the same I lay there watching him. Soaking every bit of him up.

Today

I didn't get to finish yesterday's blog but later I had a wonderful friend and her son visit. Truly lovely woman travelling her own journey with her son. There is so many of us. It's heartbreaking. I didn't want her to leave when she did. I could have talked to her all day and all night. there's nothing more comforting than to be around someone who understands.

Today I'm not as tired as yesterday, thankfully as that truly makes the days so much harder.

I went to bed with the boys last night and stayed there. So when I woke this morning I felt much better and more able to get through the day,

It's evening now and I'm putting my boys to bed. They are going through their usual routine of wrestling and playing on the bed before books. Love watching them play, seeing their smiles and hearing them laugh. Truly precious times.

I did some Christmas shopping today but as always couldn't wait to get home to my little man. He's been really whingey today at times and had one of his rages this evening. He hasn't had them for a while and recently they have started up again. I'm hoping it's just a normal thing but it frightens me that something more is happening.

They are both asleep now and I should sleep too but I have lots to do. Always got something. And being busy doing stuff and things is the only way to get through my days.

I feel a little restless today. By the end of today I felt like I needed to hide somewhere and just breathe. Disappear and take five. But then I feel guilty for feeling like I need to get away. I beat myself up about even thinking that and then keep on going. Because I know the real thing I want to run away from isn't my family but rather the life in which we exist now. I want to run away from the fear, the worry, the making sure I make every moment count, the never taking anything for granted any more and the constant trying to get it right as to not regret it later. Sometimes, like tonight I just feel so damn exhausted from it all.

I'm trying so hard to make Xmas perfect, petrified it could be our last all together. Not wanting to get one thing wrong. Covering our house with lights decorations and forever being excited about Xmas day for my kids. Making it all, matter.
I just want to say, "whatever". It doesn't matter because if it's crap, next year will be better. If today's no good then tomorrow will be ok. I can't, because I don't know how many tomorrow's i will get so if I stuff one up I'm worried I've lost a precious day.

I'm going to stop complaining now and focus on my little man. Who besides being cranky for most of the afternoon, was as always my gorgeous little boy. I just love him. He has such a round tummy now I just love it. It makes be happy to see him bigger. He was so skinny for so long and now he's put on weight and looks like he should. I love it. His hair is growing like crazy now and he's insistent on not getting it cut as he wants it to be like Layla's, funny.

He makes us laugh everyday. Tonight when no one was paying him any attention he took his shorts off and put them on his head and sat there with them on his head until someone noticed. Funny little rascal.

I try so hard not to think of the future but it's so hard. When I know the outcome of so many is not good, I'm frightened. I feel so scared because what's happening to them is my worst nightmare.

I'm still laying next to him. I hope with every inch of my being, I get all the tomorrows it takes, until he's old and grey.

I so hope for that.


Us waiting out front for our friends to arrive on Wednesday.


- Posted using BlogPress from my iPhone




- Posted using BlogPress from my iPhone

Tuesday, 3 December 2013

Waves

I think I'm managing and as the day progresses I realise a wave is coming. I'm out picking up my daughter and as I drop into a chemist it hits me. That feeling where your heart feels like it's dropped down into your stomach and the feeling that you can no longer breathe properly. That everything suddenly becomes an effort...

That paragraph I wrote yesterday. It made for a difficult evening and terrible night sleep. It's still around, I can feel it. The wave. Washing in and out when I least expect it and making me feel fragile and vulnerable. I know how sensitive Im feeling and it's all the more difficult when I read about another child passing. I feel it. The hurt. With all my heart and soul. My body aches with the sadness and I just want to curl up in a ball and cry.
There's no where to run, no where to hide. The sadness of this journey surrounds me, constantly.

I had a beautiful friend spend the day with me today and I'm so grateful she did. My morning started off tricky when I left Jayden with danny to do some Christmas shopping. I just felt so lost in the shop without him and I couldn't concentrate because I couldn't stop thinking about him. Worrying about him. In the end I gave up shopping, grabbed some coffees and came home. I was so glad to see him. Seeing his little smiling face was Like a big weight being lifted off my shoulders. Relief.

I later went back to that same shop but this time with him and my dear friend. And this time I felt like a completely different person in there to whom I was earlier. Just to be with my little man and seeing him smile eases me. Just to have time with him that I know, is so precious. To lose any is hard. Hard to even think of ever not being able to run home and see him when I'm missing him. It kills me inside when those thoughts cross my mind.

I'm so scared. The wave is rushing over me tonight like a damn tidal wave and I wish I could shake the damn thing off.

I wish I could be more positive and write uplifting entries. But that would be not telling it as it is. This is no easy journey and somedays I struggle to reach the end of them without falling apart. Especially at times like these.

I got sidetracked on the computer tonight after dinner whilst deleting something and accidentally came across photos of Jayden when he was in treatment. I still can't believe he had to endure such a traumatic, unbelievably torturous time in his life. He was so little. Still a baby. People are so quick to forget what kids like him have been through when they re enter the normal world. But us mums, never. I know I won't. It plays over in my mind in nightmares as I sleep and even during the day at my weakest moments. I will never forget. Ever. And it frightens me beyond belief.

I looked at those photos and it took me back to that time. The very moment they were taken. Gut wrenching. I sat at the computer and felt the emotions bubbling inside, ready to surface with bucket loads of tears. But in walks Jayden with his huge big smile and wraps his arms around my legs and snuggles his face into my lap and says "love you". As if he knew. Mum needed a cuddle. I cuddled him back and held back the tears, and told him how much I loved him back. I wanted to cry so bad, but didn't and instead talked about Christmas and how exciting it's going to be. Luke joined us and we continued to speak of Santa and all good things kids love.

As a parent I've learnt to hide as much of my emotions in this journey as possible from my kids and when they are around I try to snap my focus back to them. Some days are harder than others but I try my damnedest to enjoy every moment with them. because that's what's important, my kids, always. They are my reason to keep going and keep smiling.

We then got organised for bed and After bath time they played. I love the sound of them laughing together. No one makes Jayden laugh louder than his brother and sister. Truly precious sound. One that I never, ever want to stop hearing.

They are all asleep now and I've had my cry. Off to bed now and hoping sleep comes easily.




In his pjs tonight, with a sticker on his face. Loves to make me laugh.


All smiles out yesterday with Layla, and her friends. Loves the girls.



Posted using BlogPress from my iPhone




- Posted using BlogPress from my iPhone

Sunday, 1 December 2013

I put my little man to bed last night. He only falls asleep when I cuddle him. Snuggled up close to him I watch as he falls asleep. His body relaxes and his breathing is deep. I stay there for as long as I can. Watching him. Taking in, every second and hoping with all my might I get to watch him for a very long time to come.

After a while I have to leave him as Layla pokes her head in the doorway whispering how long am I going to be? She loves sitting up watching tv with me. I tell her in a few minutes and off she goes. As I slip my hand gently out from under his body I look at him for a little while longer and think how grateful I am that he is at home with us, where he should be. I never stop thinking this.

I slowly climb out of bed and as I do I'm thinking about the parents and children in the hospital right now. I walk up the hallway and think about when I use to walk the hallways of the hospital. I will never forget that time. Nor will I ever take for granted being home with all my family under the one roof. I will never, ever forget when it wasn't.

Every time I hang the clothes on the line, wash the dishes, anything... Any of the simple tasks I do at home I never take for granted. I will never forget the time when I couldn't do them for my family as my son and I were away in hospital. Now as I do these things I think of those that are in hospital now. It never stops. Children never stop being diagnosed with cancer and this journey my family has taken and continue to do so with our precious Jayden is being taken by many, everyday.

There's no way of getting away from the heartache. Once you begin this journey there is no way your life is ever the same. You meet others travelling this journey and you become friends because of circumstances you wish never existed and you hurt for them as they do you and you pray for their children as they do you. An extended family you never thought you would have but can't live without.

Right now my two boys are playing in the bath. I'm sitting just outside listening to their beautiful chatter. I love my kids so much. The fear inside me still simmers and I know always will. I'm managing to keep it that way most days, just simmering. Today however Jayden laid down on the carpet out of the blue putting his head down and said he was tired. That may seem like nothing to some and I so hope it is. But the fear that's simmering inside me boils over at the slightest sign of concern as it did at that moment. The fear that never goes away and never will.

I know I will never stop worrying so I continue to keep going besides my underlying feeling of sheer panic and concern. And after he has his little rest we made a gingerbread cake together with Luke and Layla. I Just carried on as per usual, all the while, hoping and praying it's all just nothing. Watching him through my internal microscope. Looking, worrying I will see something wrong. Hoping and praying I don't.



The kids had a fabulous time decorating their gingerbread cake . We didn't follow the instructions which made it all the More fun and unique.


This is Jayden in his elf outfit I purchased for him today after much pleading for it in a shopping catalogue . Love it. His face lit up when I showed him what I had in my bag when I came home and he clutched his face with glee and the only words to come out of his mouth were "wow" over and over again. So happy with it and on it went straight away. So easily pleased. Such a beautiful moment I will treasure.

After we finished the gingerbread house decorating, we ate some of it and then headed to the river for some family time.






These times are so precious. A simple drive to the river and splash around. Looking for shells and examining bits and pieces we find along the way. Watching my kids play together, laugh and enjoying the outdoors. Truly precious. Always aware that others are not enjoying this. Always aware that these moments are like gold. So very Precious and never taking any of them for granted.



Silly face in the car


Layla and Jayden hanging out


More silly faces in the car in our driveway.

Love my kids.....